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2015 Public Policy Conference

The Epilepsy Foundation’s annual Public Policy Institute and Teens Speak Up! conference was held April 12-14 in Washington, D.C. Representatives from 35 affiliates participated in the conference and Hill day, which brought together more than 175 teens, parents, affiliates, and volunteers for a day and a half of learning and advocacy training that culminated with visits to the Capitol. Families and affiliates shared their personal stories and advocated in support of the Epilepsy Foundation’s legislative goals through nearly 200 congressional meetings.

Teens Speak Up

Teens, families, and affiliate volunteers learned about the importance of speaking up to raise awareness about the challenges of living with epilepsy, and how each of us can take a role in educating policymakers at all levels about the epilepsy community’s policy priorities. They returned home ready to be epilepsy advocates in their communities.

Epilepsy Research and Programs

The Epilepsy Foundation is a long-standing advocate in the fight for increased funding for critical epilepsy programs at the Centers for Disease Control and Prevention (CDC) and research initiatives at the National Institutes of Health (NIH). Epilepsy programs at CDC, which provided education and direct training to tens of thousands of nurses, veterans, school personnel, first responders, and students, are delivering critical services and model programs to our communities.

Improving Access to Care in ACA Marketplace Plans

As a leader of the I Am Essential coalition, the Epilepsy Foundation brought together more than 300 national and state patient and community groups on six letters urging the Department of Health and Human Services (HHS) to eliminate barriers in the Marketplaces created by the Patient Protection and Affordable Care Act (ACA). We have met with leaders at HHS and the Administration to share our concerns with limited benefits, high cost-sharing, and lack of transparency and uniformity in Marketplace plans.  We have also worked closely with our affiliates across the country to raise awareness with state leaders and local media about the need to improve access to care. In the fall of 2014 we launched a survey, part of the #BeyondPremiums campaign, to gather information on access to care barriers faced by the epilepsy community and our findings are informing our advocacy activities at the state and federal level.

Advocacy Across the States

The Epilepsy Foundation and its affiliate network across the country remain vigilant on the legislative and regulatory battles taking place at the state level to preserve meaningful access to quality care and treatment for people living with epilepsy, and to provide support for epilepsy programs at the state level. The Foundation and its affiliates have been a voice for the epilepsy community at state houses and state agencies on a wide range of issues, including step therapy and prior authorization bills, drug monitoring programs, and physician directed access to CBD oil for people living with intractable epilepsy. Through expert and patient testimony, public comments and letters, we’ve shared with policymakers the story of people living with epilepsy, their needs, challenges, and achievements.

We’ve also asked our grassroots community to contact their legislators on numerous issues. Our Speak Up, Speak Out national network of advocates sent nearly 11,000 messages to more than 1,500 legislators, surpassing last year’s 6,000 messages. Join us as we raise awareness of the epilepsy community’s policy priorities at www.epilepsy.com/advocacy!

NEXT: Community Services and Programs